Check up

Anna had a three month check up with the CF team yesterday. She is doing well and showing "no signs of lung disease" as the doctor put it. We will continue with once a day therapy as a preventative and maintenance.  My biggest concern was her eating habits and whether she was gaining sufficient weight. Despite the fact that she only eats dairy and carbs - she gained the weight to keep her on track. We were told to keep introducing new foods or re-introducing those that she has rejected in the past in hopes she will try them and like them someday....  We will have to wait a week for the results of the throat culture which will indicate whether she has picked up the "CF germs" that I so desperately want to avoid.

Speaking of "CF germs", today we went on a walk around a beautiful pond. No longer content to stay in a stroller, she wanted to throw rocks into the water. I wanted to tell her "no" because I didn't want her to touch the wet soil around the lake. But how can I not let her throw stones when the rest of her siblings are?  I resolved to wash her hands asap, but before I could she threw a fit (as I wanted to continue the walk and she wanted to continue throwing stones) and as she did she stuck both of her hands into her mouth! I was alarmed and angry, and desperate, and crushed, and fearful all at the same time.  She cried the rest of the way around the lake path- and I felt like I wanted to as well.

Yeah!

I finally did it. I picked up the phone and dialed the CF nurse. I wanted to ask if we could take Anna down to one therapy session a day- since I have not noticed her coughing.  I left a message and a couple hours later the nurse called back.  The nurse said, "Great and congratulations." And that was that!  I felt so relieved. I felt like celebrating!

P.S. As I hung up the phone - Anna coughed! But she still seems fine!

Doing well

When I announce to Anna that it is "time for therapy" she replies most days with, "Yeah!" Often that is followed by running to her place on the couch and attempting to scramble up on her own. Then I ask her if she wants books or puzzles, or perhaps we will play with a toy together for the first 20 minutes of her breathing treatment. All other children are on their own during that time and I try to give her all of my attention. She loves to read books. We also do finger plays and songs. When the breathing treatment is over, it is time for the vest therapy- and with that comes a video. (I often wonder if that isn't where the initial "yeah!" comes from when I tell her it is time for therapy-a.k.a "time for a video" in her little mind!) She sits alone sometimes, but more often Luke is right there by her and if they can manage it, the bigger kids watch the "made for toddler" video as well! When the timer goes off on the vest 20 minutes later (now a full 50 minutes of therapy) she again says, "Yeah!" I unhook her from the vest and she glady watches the end of the video.  We repeat this entire process in the afternoon or early evening for a 30 minute therapy session.

She has been doing so well that I have been considering contacting the doctor to see if she can go back down to one therapy session a day. But then as soon as I think I am actually going to contact him, I hear her cough a little.  And then I doubt and pause and don't make the phone call after all...